Over 35 patients, family members and Genetics staff attending the 2018 VHL UK/Ireland patient event at the Clinical School within Addenbrooke’s Hospital, Cambridge on Saturday 17th November 2018. Doors opened at 10am, in which patients and family members were able enjoy a coffee and meet other patients, before taking their seats for the day’s guest […]
Dublin Support Group Meeting When: April 3rd @ 12.30-4.30 Where: Tolka Room in the Centre for Learning & Development (CLD), Tallaght Hospital Guest Speakers for the Day Joyce Graff: President and Host at Powerful Patient/ Former Founder and Director of VHL Alliance Mike Kelly: Counsellor with the Irish Kidney Association since 2006 Looking forward to […]
Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. On 28 February 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases. Over […]
30 people + 1 dog attended our second arranged support meeting at Saint Mary’s Hospital, Manchester. – Connect with other patients and families – Patients, family and friends welcome – Lunch and refreshments provided Guest speakers included researchers, genetic counsellor team, charity members and consultants: 10.00 – Registration – Tea & coffee 11.00 – Welcome […]
The charity submitted an application to the Ireland Charities Regulatory Authority (CRA) last year which has now been approved under Section 39 of the Charities Act 2009.
From the Charity Commission: “Registered Charity Number 1160381 VHL UK/IRELAND We are pleased to tell you that we are satisfied VHL UK/IRELAND is established for charitable purposes for the public benefit. It has therefore been entered onto the Register of Charities with the Registered Charity Number 1160381. The decision to register VHL UK/IRELAND was based […]